Caring for Rural Patients With Interstitial Lung Disease: Perspectives of Pulmonary Fibrosis Foundation Care Center Network Nurses and Providers

Background: The Pulmonary Fibrosis Foundation Care Center Network (PFF-CCN) provides expertise in the diagnosis and management of interstitial lung diseases (ILDs); however, most centers are in urban areas. Little is known about access to ILD care for patients living in rural areas. Research Question: What are the perspectives of PFF-CCN providers on the accessibility and provision of ILD care for rural patients? Study Design and Methods: A mixed methods survey designed by the Pulmonary Fibrosis Foundation Rural Health Outreach Committee was distributed with weekly reminders to all 68 PFF-CCN sites between November 2021 and February 2022 through REDCap. The survey included 21 closed-ended questions that were analyzed using descriptive statistics and 3 open-ended questions that underwent thematic analysis. Before coding, free text responses were reviewed, and nearly all were sorted into 1 of 2 groups: barriers or facilitators to ILD care. Responses were then coded inductively and sorted into categories, followed by themes drawn from the data. Only 1 survey per PFF-CCN site was analyzed. Results: A total of 68 PFF-CCN sites (providers) completed the survey (100% response rate). Of these, 57% of providers perceived that rural patients often experience delays in diagnosis compared with their urban counterparts, and 47% perceived they often have delays in ILD treatment. The following 3 themes emerged as barriers to ILD care for rural patients: poor access to care (73% of all coded barriers), limited resources (23%), and patient preferences and concerns (3%). Three themes emerged as facilitators to ILD care: local collaboration (49% of all coded facilitators), telemedicine (30%), and patient-centered care (21%). Interpretation: PFF-CCN providers identified several important barriers and facilitators to care for rural patients with ILD occurring at the patient, provider, and health care system levels.